Boris and Nicole Open Up About Sophie's Spina Bifida

Three-year-old Sophie Tei Naaki bounds into her family’s sunny Atlanta kitchen, all smiles and puffy pigtails. “I made poo-poo in the potty!” she declares as her parents erupt into cheers. It’s the kind of positive reinforcement familiar to all parents of young children, but in Sophie’s case, the accomplishment is truly remarkable. Born with spina bifida, Sophie requires round-the-clock catheterization for her bladder, and she must be diligent about potty breaks. “We celebrate the poo-poo here,” says Sophie’s mom, actress Nicole Ari Parker. “It’s good news in this house.”

There was a time when Nicole and her husband, actor Boris Kodjoe, feared there would be only bad news in their young daughter’s life. “We have gone through so many different emotional levels with Sophie,” says Boris, 35. “We had the fear of her dying to paralysis. All kinds of different monsters attacked us.”

Tamara Reynolds for PEOPLE for use on CBB

Read Sophie’s story and see more photos below.

It didn’t start out this way. Eight years ago the two met as co-stars on Showtime’s Soul Food, which aired from 2000 to 2004, and the couple went on to have their own short-lived series Second Time Around together. In 2004, the German-bred Boris proposed to Nicole, 38, near his hometown of Freiburg atop Kandel mountain. “It was like The Sound of Music,” recalls Nicole. “It was so romantic.”

Immediately after returning home, Nicole learned she was pregnant. “I was really into great preparation — hypno-birthing, prenatal yoga,” the actress says. “No morning sickness. We did all the testing. There was one test that came back [saying] a chromosome count was off, but when we went into genetic counseling, it was basically, ‘Don’t worry about it.’ And that’s what we decided to do.” Nicole — who was “religious” about taking prenatal vitamins — delivered Sophie on March 5th, 2005. “I labored for a very long time at home with a midwife. I got to the hospital at 7.5 cm and then I stalled,” she explains. “At 8 cm they gave me the epidural and I slept for 45 minutes. I woke up and pushed her out.”

With no apparent complications, Boris left the hospital to finish filming the 2005 movie The Gospel. The next day, “the neurologist came in and said, ‘We have something to tell you: The nurses found a dimple in the lower part of Sophie’s spine,'” recalls Nicole. A test confirmed spina bifida, a birth defect with varying degrees of severity. Phoning Boris with the devastating news, “it was like your whole world just crumbles,” he says. Adds Nicole: “We had to come together as a new couple. We went from a fairy tale to the fast track.”

Tamara Reynolds for PEOPLE for use on CBB

As they came to terms with Sophie’s condition, Nicole grappled with whether or not she was to blame. “I’ve racked my brain, been to therapy, cried my eyes out with guilt,” she admits. But doctors assured her there was nothing she could have done. Boris agrees: “It was random.”

Diagnosed with the most serious form of the defect, Sophie would need surgery to detach her spinal cord from a fatty mass called a lipoma. With wedding plans already underway, the couple married in May 2005 in Freiburg. “Family was all around us, prayers were strengthening us,” says Nicole. “But the minute it was over, we flew back for the operation.” The surgery was deemed a success.

In October 2006, when Sophie was 19 months old, the couple welcomed their second child, son Nicolas Neruda. Although their little boy was healthy, Nicole was not. “I suffered from postpartum [depression] pretty bad with Nicolas, but because the anxiety level of protecting Sophie was so strong, [it was like I had] postpartum covered with super-mom-ness,” the actress explains. “I couldn’t afford to cry. There was no way.”

Tamara Reynolds for PEOPLE for use on CBB

There was more to come. When Sophie was 2 years old, a severe urinary tract infection revealed that she had developed a neurogenic bladder, a frequent complication of spina bifida in which the nerves that carry messages from the bladder to the brain do not work properly.

Given the choice between surgically augmenting her bladder so it would empty through her belly button or catheterizing her themselves, they chose the latter. “We believe in the body healing itself,” says Boris. “We picked the option that gave her bladder that chance.”

It has been a huge commitment, with the couple catheterizing Sophie every three hours. It’s also been a difficult adjustment, but one that has gotten better with time.

“[When we introduced it,] they told us it would take six weeks for her to adjust. She was screaming. You would’ve called social services,” admits Nicole. “One day Mommy was using a wipey and changing her diaper, and the next day I’m holding her down, Daddy’s pinning her down and tubing her. It was the worst feeling ever. It was saving her life, so we had to do it. For some reason, after 10 days, she understood.” Adds Boris: “Now she sings, ‘Take the pee-pee out!’ She took charge.”

Still, Nicole and Boris are realistic about the situation. “We don’t fill her head with false optimism,” Nicole explains. “My plan is to teach her by the time she’s five years old about the importance of clean hands, that she can have her own [catheter] case and go to slumber parties. Just [to] have her self-esteem intact. I’m moving in the direction of self-sufficiency with the catheterization.”

Tamara Reynolds for PEOPLE for use on CBB

Now close to celebrating her fourth birthday, Sophie is doing well. “Her personality surprises us every day,” says Boris. “She’s just sunshine, she’s so bubbly.” Adds Nicole: “After all the crying we’ve done, to hear the giggles, it’s like heaven. Through all the grave circumstances of Sophie’s life, let it be known that she’s still the bossy big sister!”

Boris and Nicole pursue alternative therapies for Sophie, including acupressure massage, laser acupuncture and probiotic supplements to encourage a healthy digestive tract. “[Initially] there’s no time to tell anybody, there’s no time to cry, there’s no time to do anything but make sure your daughter is okay,” Nicole explains. “Now we’re in a rhythm where we feel comfortable blending our Eastern tendencies with Western medicine.” And it’s working. “All the doctors here at the spina bifida center, every time we have another checkup they say, ‘Wow, based on her diagnosis, this is a miracle. Keep doing what you’re doing,'” shares Boris proudly.

Reveals Nicole, “Instead of an antibiotic, we give her a herbal remedy that strengthens the kidneys and is kind of an antiviral formula — UTI Clear. Once in a while she’ll still get a UTI, but before she was getting them once a month! We then put her on a 7-day course of Bactrim — she’s treated with antibiotics on an as-needed basis. When she had her last set of checkups, her kidney and all her bladder functions were amazing.”

The couple has started Sophie’s Voice Foundation with the goal of raising $2 million for the trial of a new surgical procedure which reroutes nerves from functioning legs onto the bladder, where they are taught a new job — to void. “The success has been incredible,” Boris explains. “God doesn’t give you anything you can’t handle. And I’m not going to lie: At first it’s a shock. You want to cry. But especially by looking at Sophie, you get over it quickly. [Fame] is not just a privilege, I think it’s a responsibility. We are here to lend people a voice who don’t have a voice. We’ve committed to that, and we’re going to do whatever we can to give this a huge voice and hopefully change it.”

Adds Nicole, “Sophie says, ‘Mommy, when I grow up I won’t use the tubes anymore!’ And I’m hopeful that she’s right.”

Tamara Reynolds for PEOPLE for use on CBB

Spina Bifida Facts:

Spina bifida occurs when a baby’s spine fails to close during the first month of pregnancy, resulting in nerve and muscle damage that ranges from mild to extreme. It is estimated that neural tube birth defects like spina bifida occur in seven out of every 10,000 live births in the U.S., according to the Spina Bifida Association.

Research shows that folic acid in prenatal vitamins taken daily prior to conception and during pregnancy can reduce these defects by up to 70%. Fetal surgery — in which doctors operate on the baby’s spine in utero — may also be an option.

What a beautiful, brave little girl! And what brave parents, too. I know they must have found it all so scary, and to have to hold her down as she screamed must have just felt like they were dying inside. I hope her declaration of not needing the tubes anymore someday will prove true for her 🙂

Aniah
on January 15th, 2009

One of the most gorgeous families in Hollywood! I wish we could see them more often.

lisa
on January 15th, 2009

12 years ago my daughter was born with a dimple on her back. The Dr.’s missed it. I didn’t know what it was, I took her to 4 different doctors before I took her to the University of Chicago at Chicago Hospital and they were able to let us know that she had tethered cord it is a form of spina bifda. Today my daughter is a happy healthy 12 year old. If she wouldn’t of had surgery when she was 1 year she would proably be in a wheelchair now. I’m so grateful to the Dr.s and the University. I took prenatal vitamins and folic acid before I got pregnant. So I don’t know why this happened.

what a great family.even though they are going through some trying times they are sticking together to make sure that baby has a normal life as can be.i love them as a couple and parents.i really feel for nicole when she talks about the depressions.i’ve had bouts with it twice but it was so minor i was about to get through it thank goodness.

Brannon
on January 15th, 2009

Beautiful child and beautiful family! Love that they are telling her story to raise awareness.

What a beautiful little girl she is!! I am so glad to see that her parents are taking a proactive approach to her care and will be helping her to be more independant as she grows up. I was born with Spina Bifida 40yrs ago and my parents raised me to be as independant as I possibly could. I graduated high school and moved out of the house when I was 17 and got married 3yrs later. When I was born, the medical treatment wasn’t near as advanced as it is today and it’s a little strange and amazing at the same time to hear about all the new technology.

bridget
on January 15th, 2009

wow what a day for a sb surgery. my 11 year old has sb. we found out at 17 weeks and were as prepared as could be. he is having his 10th surgery in the morning for a tethered spinal cord. he’s had bladder surgeries, foot surgeries, bowel surgeries, and spinal surgeries. he uses a wheelchair, but other than that he is very healthy and happy. i know things could always be worse. its nice to see an uplifting story about another family going through the same ups and downs as ours. sophie is adorable:)

FC
on January 15th, 2009

I’d say Nicole is damn near Superwoman to have gone through all that while pregnant with Nicolas. And to have two beautiful children to show for all of her and Boris’s efforts is a blessing.

To hear all of what they went through and to see them now… It’s beautiful. And these photos are as well.:)

What I can’t get over is how Nicolas has changed! He was a little baby last time I saw him. Who told him to go and grow up into a sweet little boy? I swear, it’s a trend. Cute babies disappearing for a while and coming back as sweet kids. I can’t take it. Where did the time go?

Destiny
on January 15th, 2009

Okay, daddy is HOT! Mommy is gorgeous. Sophie is breathtaking and Nicolas is adorable. But this family seems as beautiful on the inside as they are on the outside…and that is saying a lot. In an article that I read before, I remember them talking about their faith. I was so inspired by that article as I am by this one. This time not by the parents though, but by the Ms. Sophie’s confession of faith ~ “Sophie says, ‘Mommy, when I grow up I won’t use the tubes anymore!”. I will be sure to pray for Ms. Sophie and the entire family. As long as she has the faith, I believe that God can heal. Whether through doctors and medicine, or through miracles, which according to the doctor they are already experiencing. So I hope they keep the faith and stay lifted always. And I hope we see them more on tv and the big screen. They are both great actors. Great story. Thanks for posting.

Without a doubt, a truly beautiful, strong and inspiring family. Thank you, Boris and Nicole, for sharing your story 🙂 All the best 🙂

Daniela
on January 15th, 2009

That is one beautiful family!!!!

Mary
on January 15th, 2009

Those children are georgous!!! I’m glad that they are using Western and Eastern medicine together.
My daughter was born with a kidney problem, We did not know until she was around three. I wish I was more aware of Eastern Medicine. My daughter was always placed on Bactrim for prevention. Unfortunately the Bactrim turned against her and caused her to have a drug induced Neutropenia. We almost lost her, it completely depleted her bone marrow. I hate that drug with all my might. She was only 9 years old, was in the hospital for 13 days and for 2 months after her hospital stay we had to go in three times a week for blood tests. She’s now 16 years old healthy and very athletic.(with one scarred kidney, They say it should not cause a problem until she gets pregnant) When I here people are put on that drug I cringe, I want people to be educated on that drug. Just watch for symptoms, talk to the Pharmacists if your child is on it for more than a month.

J-Lin
on January 15th, 2009

What a beautiful family! I love Nicole’s hair and Boris is just a piece of human perfection. I’m glad they have been blessed with beautiful children and have overcome this obstacle.

Loren
on January 15th, 2009

Beautiful family and I certainly think Sophie may be right.
Hopefully there will be a breakthrough to this and many other
diseases in the near future and certainly in Sophie’s lifetime.
God bless them.

What an amazing, amazing story! It brought tears to my eyes. Sophie is a strong and courageous little lady and she seems to have the best support system from Nicole and Boris. I pray that she will continue to get better everyday and not have to “use the tubes anymore”!

Brittani
on January 15th, 2009

Aww they are all so beautiful. I loved watching Boris and Nicole on Soul Food. Who knew they would make such beautiful children. I understand what Nicole is going through, and she is such a brave woman. I hope I am as brave and strong as her when I have my own children! God Bless You Nicole and Boris!

Just Saying
on January 15th, 2009

Wow… a touching story, truly inspiring. I’ve heard it elsewhere before but each time there is something new and and makes it even more touching. I wish them the best and admire their strength thru this.

jasmine
on January 15th, 2009

Aww, I haven’t seen the family in forever…the kids are so cute! The little boy reminds me of my own lil bro at that age!

Candy
on January 15th, 2009

A beautiful family who have chosen to utilize their celebrity to increase public awareness and education about Spina Bifida. Super Hot Family!

amy
on January 15th, 2009

A truly inspiring story. I can’t handle it when my daughter cries from scratches or minor injuries. I can only imagine what is was like to hold her down while she screamed and was self-cathed. God bless this family!

isacutie
on January 15th, 2009

This is a touching story and I truly admire Sophie’s parents and Sophie herself. God bless them all.

Becky
on January 15th, 2009

What a wonderful couple. I just want to say what courageous people they are. I was born with spina bifida back in 1965. My poor mom had a difficult labor and they didn’t have the tests and technology like they do now to let her know anything was wrong. I believe God gives people like them and my parents children like us because He knows that they are up to the challenge of raising children with a disability and have and will give the love and support a child with disabilities has. So I say to Boris and Nicole, you are the best and believe me you will be rewarded for your efforts and love with this special little girl. Thank you for having the courage and love to raise a child with a disability.

Fevvers
on January 15th, 2009

Mary, thats amazing…I thought the same thing…Bactrim, I HATE it. They gave it to my when she was 14 for gastro and she just shut down, her t-cell count dived and they thought she had leukemia etc etc. Just a reaction to Bactrim. She turned into a yellow stick and almost died. Fine now.

Anyway they are a beautiful family and I admire the strength it took to hold your child down in that level of distress. They are incredible. To me that is true love, not all the hugs and kisses which are wonderful, but the fact that a parent will put themselves through hell for their child. I admire them so much.

Mia
on January 15th, 2009

A great story, glad to hear everyone is doing so well. The family is gorgeous, and seem like very close/healthy environment to grow up in.

desaudia
on January 15th, 2009

I think it is wonderful they have opened up about their situation. I am sure it will be an inspiration to many others.

And I have to say it- this i one of the best looking families I have EVER seen!

Lori Boltz
on January 15th, 2009

My beautiful granddaughter Anna was born with Spina Bifida two years ago this month. She is part of the MOMS study – check out the Spina Bifida website. She was placed in the control group rather than the study group for what you referred to as the “in utero” surgery. In order to have that surgery, the parents and the baby have to meet certain criteria. There are 3 participating hospitals in the nation. Anna, too, has to be catheterized. Our big news is that Anna took her first steps last week using a walker! There will be no slowing this perfect child – she is a treasured blessing.

jen
on January 15th, 2009

Ok, this family may just be Hollywood’s most beautiful! And hello! Where’s Boris been on CBB all these years?!

erin h
on January 15th, 2009

What a beautiful family! I love these two, I see them at church when they’re in LA and they seem so down to earth. I’m glad they have started this foundation and are sharing their story. As a school psychologist, I work with many children with special needs and one of my students suffers from this. A foundation like theirs will help less fortunate children acquire the surgeries and treatments they otherwise wouldn’t. I thank them for that.

heather
on January 15th, 2009

I haven’t dealt with spina bifida, but I deeply appreciate much of what they are saying. On Thanksgiving night, my 2 year old sustained life-threatening injuries. She is okay now, but her face is severely scarred. What Boris and Nicole said about there not being time to tell anyone, not being time to cry…only time to try to take care of your hurt child…that feeling is so familiar it makes me want to cry.
Bless them for doing something so good with somethign that could have been so bad; it is what we are aspiring to with our little girl’s situation, and much like Sophie, all I can see so far is that this adversity is making her even more incredible !

Diana
on January 16th, 2009

very touching.

I will never complain about having to change ‘yet another’ a diaper again.

Carrie
on January 16th, 2009

Good for this family, and thank you for using your voice. I have a child with Congentital Heart Disease, who has had 3 open heart surgeries. He also has a prosthetic and cadaver valve. He is on a blood thinner which can require sometimes weekly blood tests from an at-home machine. At first it was hard, but now he “helps” us and he will soon be doing his own, he is 4. We have had our share of bad times, but try to keep him as normal as possible as well. We let him run and wrestle and play, within means. But it is important for the world to know that children with special needs are children as well, and can live fairly normal lives.

Pam
on January 16th, 2009

We have a 18 month old son with Spina Bifida and would love to hear more about how they are mixing Eastern and Western medicine. I think that this has been a real challenge. It seems like doctors want you using all kinds of medicines and are not willing to give you any other alternatives. Are there certain kinds of doctors you can get more of a natural medical treatment? Would this work into the schedule of all the other doctors?

Morgan
on January 16th, 2009

I saw this in People magazine and am delighted to see it more in depth here on CBB. The way this family has met the challenges they’ve been faced with and are still strong, grateful and willing to share their trials and triumphs is inspiring. I love how Nicole pointed out that she’ll encourage Sophie’s participation in normal childhood activities but doing so mindful of her condition, and focusing on Sophie’s self esteem. It seems these are two loving and well equipped parents who’ve been blessed with these adorable little children. All the best to them!

Kimberly
on January 16th, 2009

How inspirational is this!!! This little lady has got a great future ahead of her. I stand in belief and join in prayer with Kodjoe family that little Sophie and all the others posted here will be complete healed from this condition.
Psalms 103:3

Carmen
on January 16th, 2009

My son is 11 months old and was born with Spina Bifida. He is my miracle. I thank GOD for him every day. There are so many levels of severity depending on the location of the spine. My son is very fortunate it that it is the lower lumbar. We are really working hard with therapy for his hips and legs. He is my gift and I know that he will be fine. You have to stay stong and have faith. GOD WILL NOT FAIL YOU.

Liz
on January 16th, 2009

Loved this story. Thank you so much for sharing and best wishes to this beautiful family. Sophie seems like such a treasure. 🙂

Esma Henry
on January 16th, 2009

This is such an inspirational story. My 4yr old niece was diagnosed with SB before birth,in St. Lucia. Luckily her mother decided to give birth in the U.S after local doctors advised to abort her. She has sinced moved back to St.Lucia after surgeries in the U.S, but has to return at least once a year. This has been
so difficult on the family, but spending time with her and watching her slowly progress has been so amazing.
To Nicole and Boris keep up the good work.

Sonya M
on January 16th, 2009

Thank you two for being so transparent in a world where this is rare. May your openness give other families hope that there can be light at the end of a dark tunnel. Keep on being an inspiration.

Beth Ann
on January 16th, 2009

My 6 year old daughter was born with a dimple on her lower back. The doctors at the Hospital missed it too. Her wonderful Pediatrician saw it at her first well visit and sent us to Children’s Hospital Of Philadelphia (CHOP) to be seen by a neurosurgeon. Long story short, during her first 4 months of life we saw many specialist and went to genetic counseling. We discovered that she was missing a kidney, had cysts on her ovaries, had the sacral pit and was missing both Pedicles on her L4 vertabrae. They ruled out VATER Syndrome and just put her in a small percentage of people who have renal and spinal abnormalities. She is now 6 and has formed scoliosis and wears a brace to control it. I give this family a lot of praise for being to wonderful to their daughter. God Bless them!

Susan
on January 16th, 2009

I was born with spina bifida in the days before folic acid. I was late, my mom said I was a 10 month baby (I finally realized I was probably been conceived V E day, when Germany surrendered).

Anyway, back then only 12% of children with spina bifida survived. My mom ignored a doctor and neighbor when they said I should be institutionalized. They operated on be at age three at Children’s Memorial Hospital (now it is emergency surgery). I was in the hospital about two weeks and my mom could only see me on Sunday because it was felt to hard on the child to visit daily. I went to a school for the handicapped with a lot of polio, cerebral palsy, two dwarfs, a beautiful boy who we all loved that had cancer of the leg. My friend Gerry had a leg that was shorter. I think the hardest was a girl that had scabs all over her body. The strange thing is when you met someone you asked them what they had and then after that you were just kids. What I am trying say is I have learned two things: “Why not me?” and “It can always be worse”. My parents were great and treated me like the other three kids when possible. I went on to become a medical technologist, get married, have three kids and three g-kids. I have had a truly blessed life. Your daughter is extremely lucky to have chosen you and your husband as parents. I always knew something would eventually help me from not having to wear diapers. At age 21 I had a Illiac conduit. It gave me life. I believe in science and I believe there will be remarkable changes for person’s born with spina bifida. Stay strong.
Susan

Thanks for sharing with us about your daughter. My son Anthony is 11 months old and was born with Spina Bifida. His opening on his back was L3-L5. He has hydrocephalus and had a shunt placed when he was 10 days old. Since birth he has had a total of 8 surgeries. He is the light of our world. He just blows us away everyday with his strength. During my pregnancy I was told that he would never walk and that he would have some type of brain damage, well today he has absolutely no brain damage and he is showing that he will walk, it will just take time. He is now sitting up and he just began pulling himself up on his toy to a standing position. He does wear AFO’s and his Dr’s believe that he will be able to walk.

Thanks for sharing your story with the world. I’ve always wanted to do the same. I have a 4 year old daughter with spina bifida and hydrocephalus. It was diagnosed in St.Lucia through the ultra sound when I was 25 weeks pregnant. I then went to the US to have my daughter. I was told she would not walk since her opening was L4-L5 and she would have some brain damage. I am happy that I have a very smart,bubbly, happy little girl who shows good signs that she will some day walk. She wears braces and uses a walker to move around. She has no control over her bladder however I thank God she has not had a urinary tract infection. Her surgery was performed the day after she was born to close the opening over here spine and she had a VP shunt placed in her head to drain the fluid. She recently had another surgery to flatten her feet and she is doing very well. Presently she is trying to stand on her own. We have Faith that our daughter will pull through this it is just a test of our faith.We thank God everyday for our daughter and for the support of our friends and family who never stop praying for our precious child.
She was given a wheelchair and she said to me ” I don’t want the wheelchair because I’m going to walk”.I believe her.All the best with Sophie and be strong.

Mary
on January 17th, 2009

i absolutely beamed with pure delight when i saw this family featured in the latest issue of People. it had been a while since i read or heard any real news on them, so imagine my surprise to browse the magazine stand and see a pic of this lovely family on the front cover. Sophie and Nicolas have gotten so big and so adorable since i last saw pics of them. could Sophie look any more like Nicole if she tried?! lol! my goodness, the resemblance to mommy is amazing. on a sadder note, i was saddened to see exactly what trials and tribulations this family has gone through in dealing with spina bifida. i also think that they have become stronger for the struggle. you can’t help but look at the smile on this little girl’s face and not know that she is worth every sacrifice. they are doing a great thing by helping to raise awareness for this birth defect. i hope Sophie grows up to become the smart and independant young woman i know Boris and Nicole want her to be, and also to continue work with this foundation to help other kids affected like her. thanks for posting this story on this website. it had everything in the magazine article and so much more. i’m a huge fan of Boris and Nicole and stories like this make you realize that celebs go through the same obstacles in life that other people do.

Naomi
on January 18th, 2009

Finally a famous family that is not hideing the fact there child is not perfect. I have two childern my son is 6 and healthy and my 4 yer old daughter was born with spina bifida myelomengicile L4-L5 she has a shutn wears braces and is cathed like sophie every 3 hours excpet at night when she has a night folly in. I am very happy to see that they took a very proactive approach to her care and that she is healthy. I found out at 18 weeks pregnancy that my daughter had SB. so I was sort of able to prepare. Also dont forget to vist spinabifidaassociation.org its the national website for the national spina bifida association. Its a very worthwhile group and they will help you find chapters or support groups in your area that you can help with or just get together to chat and get to know one another.

Jen
on January 18th, 2009

What an awesome story and strong family. My 8 year old daughter has Spina Bifida. She’s had 29 surgeries in her life. I appriciate all that Nicole and Boris have gone throught with Sophia. I really appreciate the fact that they are public about the fact the Sophia has Spina Bifida.

Spina Bifida is a common birth defect, but yet if you talk about it, most people still ask “What is that?” It will take people like Nicole and Boris spreading the word.

Thank you and may God Bless your families!

Elizabeth
on January 18th, 2009

Those kids are so cute! I definitely know how they feel though because I am 15 and I was born with Spina Bifida and have a lot of medical issues still to this day…Had 3 major spine surgeries and scoliosis in my back. I know how they feel

Tracy
on January 18th, 2009

My youngest daughter was born with VACTERL/VATER Association and was born with this same form of spina bifida as little Sophie. It took a while for a diagnosis since she was not born with a sacral dimple, or other signs. She was symptomatic since birth and unfortunately didn’t have her cord detethered until she was 14 months old. Luckily shortly after surgery she began pulling herself up to stand and shortly after that began walking. We don’t know the prognosis of her bladder or bowels at the moment but will be traveling to another Children’s Hospital to find out.
This is a wonderful article and great way to spread awareness about a tethered spinal cord ( a.k.a. one type of Spina Bifida)

Kristin
on January 19th, 2009

My son was born with caudal regression syndrome which is similar to SB except his spine quit growing at the L1 and he is paralyzed from the waist down. It is so wonderful to see articles like this focusing on the more positive aspects of what others go through. I am a huge advocate and will talk to anyone that will listen about my son’s condition. I think it is wonderful they started Sophie’s Voice Foundation and shed more light on it. I believe that my son chose me and believe the same thing for others.

Sarita Loya
on January 20th, 2009

My daughter has spina bifida in almost the exact form. She was diagnosed at birth, as no test showed any problems. We were lucky enough to have a top surgeon in San Diego who operated on her at 3 months. Breana is a ray of sunshine, a bubble of love, walks, runs and you would never know she had Spina Bifida just by looking at her. She is eight years old now and caths herself at school and we monitor her bowel movements as best we can. I am so happy to hear of the new surgery mentioned in the article!!! There is hope for my daughter to help her in ways she needs. Thank you for this article. Thank you to the Spina Bifida Association for all their support and for emailing this article to me.

Nancy
on January 23rd, 2009

I have a 3 week old baby myself that has the most severe form of spina bifida also. We knew she would have this defect long before she was born, and it is very hard to accept at first. But thank goodness for modern medicine, my baby came through the surgery nicely and we pray for continued miracles everyday. They do so much for children with this birth defect now, and I’m hopeful that my sweet baby girl will walk someday. Kudos to this couple for sharing their hopes and fears about this birth defect. And if you know anyone who is trying to conceive…spread the word about taking folic acid. I had no idea about it until it was too late.

Kim
on January 29th, 2009

Am so thankful this article was published… Our five yr old son has spina bifida. He had fetal surgery when I was 19wks. pregnant with him at UCSF in San Francisco. The MOM’s (management of myelomeningocele)study was such a blessing to us and is a great option for those that know in time and who want to try fetal surgery. I am encouraged that a popular magazine like People are including this info. It makes those of us to whom spina bifida is a daily part of life feel more validated.

I did not read the original article in People but saw references to it in the letters in a later issue. I am 64 years old and was born w/ spina bifida. I was especially interested in the posting from Susan, #43, as we are about the same age and her history looks much like mine. I also have an ileal conduit (had mine at age 17), and was involved in a medical-related profession (occupational therapy) until my retirement in 2001. My parents were given the same dismal prognosis–I wouldn’t walk or talk, and would be mentally retarded. I had my spine closure surgery at about 20 months, after having 2 attacks of spinal memingitis, one as a newborn, and another at about a year old. I walked at about age 3 w/ a walker, then later w/ braces and crutches until my late 30s (could walk w/o either in a confined area using walls and furniture to assist me);I started using a manual wheelchair in 1982. I was a good student, attended regular schools, and completed college and one year of graduate school. My parents treated me like my siblings (I’m the oldest of 6) as much as possible, including having high educational standards and expecting me to pull my weight in the home (one of my mother’s favorite phrases was “Here’s a good sit-down job for you”!) Like Susan, I’ve had a good life; it hasn’t been a bed of roses, but it sure beats the alternative, and besides, whose life is always a bed of roses?

PJ
on February 3rd, 2009

What a sweet family! You know I read too many Hollywood baby names when I was quickly glancing at the article titles and thought that the last three words in the title was the little girl’s name. I’m so used to wild out of the blue names, I wasn’t even thinking until it jogged my memory.

montoya
on February 4th, 2009

I wish them all the best and appreciate them coming forward with their story. I’m sure it will help others.

Michelle
on February 15th, 2009

May God continually bless and keep your family as you take care of Sophie. I am inspired by your inner beauty and your role as parents “doing the right thing, come what may”. I’m sure this is the greatest role you will ever play and its for real. I respect your dedication as a couple to your marrriage and your family because when all is said and done you must rely on each other to get through the challenging times. I implore you to “keep the faith” because God works miracle every day. He’s working it right now in your lives. Stay together on one accord and you will be blessed. Sophie is the sunlight that will radiate on other lives. Your beautiful daughter was given to you to help others and I am so glad you all are sharing it with the world and fulfilling God’s will. Your role in life is greater than the one on the screen and you don’t need an Oscar for that. You two are my heroes!!! May God Bless you and your adorable children 🙂

anna
on April 30th, 2009

what an amazing story and they have a really beautiful family

mark crockett
on July 30th, 2009

…all i can say is ‘WOW’. such a beautiful little girl and a truly incredible family. y’all go on wit’ your bad selves!

After several miscarriages, I became pregnant. During the 6 month checkup, I found out I was having a little girl and that she would be born with Spina Bifida. That was 7 1/2 years ago. I won’t lie and say it has been easy. It has been hard because you hear your childs cries and anger because she is not like everyone else. The morning after she was born, she had surgery to repair the hole in her spine, 6 days later she had a shunt placed in her brain because of the fluid on her brain. She has had several surgeries in these past several years. Her shunt malfunctioned when she was 2 months old and then she had her left foot corrected at 3 years old. She can walk and run with the use of AFOs and has a some bladder problems such as frequent UTIs. She does not have control of her bladder or bowels. Last March, she became ill and was diagnosed with a shunt malfunction. We are taking this day by day. Her doctor does not want to do surgery unless it is absolutely necessary. He said sometimes SB children can grow out of needing one. Tomorrow she has an appointment with her Orthopedic surgeon and we are hoping that she will no longer need her AFOs. She is a true blessing to us and the rest of our family. She does struggle with self-esteem issues. We reassure her daily that she is a beautiful person inside and out and to be proud of herself because she is a strong person. She has long blonde hair and a smile you can see from miles away. She is the most important thing in my life and I will always be by her side.

Heather
on March 3rd, 2010

Beautiful story. I too have a child with SB and can relate to the emotional roller coaster. Daniel is now 9, and I wouldn’t change him for the world. He is a blessing to everyone he meets.
I wish more celebs felt the importance of bringing this defect to the public. It is the #1 or 2 birth defect and yet nobody knows about it unless they are affected personally. With more publicity, money for research and treatment would be more readily available.

Walter Nash
on March 8th, 2010

Enjoyed the story. Nice to know that some challenges can be experienced by everyone. Just wanted to know if there were any alternative treatments in the Dallas, TX area. I have a daughter soon to be 7 w/Spinabifida. Cath every 3-4 hours, etc. Just looking for ways to enhance her quality of life.

Gigi
on May 19th, 2010

I just wanted to add that “folic acid” is actually synthetic. The natural form is folate or l-methylfolate, which is also found in food. This is important to know because they never tell you that 20% to 30% of the population CANNOT process folic acid. Those 20 to 30 percent could take all the folic acid vitamins and it would not do any good. I am one of those people and I have to get folate from food and I can take a supplement called Metafolin. Metafolin does cost more than the cheap synthetic folic acid that they put in vitamins. But it really is affordable. I have found it for $12 for 100-day supply at 800 mcg dose per day.

Please spread the word. Its better to be safe than sorry.

Lea
on July 26th, 2010

I have a friend that was born with spina bifida and she had surgery…but the thing is that she was papralyzed from it from the waist down…shr gets uti all the time and i feel bad…she just had surgery last year because her shunt broke…and their was more fluid going into her brain…they needed to take it out…she is happy though…that is all that matters…

Lynne
on October 16th, 2010

I am a 62 year old female and I was born with spina bifida well before the use of folic acid. The surgery to close my spine was done when I was twelve hours old. By the age of three I walked with the aid of crutches and braces and haven’t stopped yet, although I find walking more difficult these days. I too had difficulty developing bowel and bladder control, but through physical therapy and physical activities to strengthen weakened muscles, both processes “learned” to operate properly and I learned to read my body’s subtle signals. A hint to prevent UTIs might be the use of antibiotic after catheterization depending on what Sophie’s doctor recommends. I too struggle with self esteem issues even now. That could be a side effect of being born “different” in a society that doesn’t often embrace differences.

I too was a high achiever all through my educational years. I attended public schools, then college. I married after college and we have two able bodied children who are now married themselves. I earned a Master’s degree in 1995. I have not yet retired from my work at a local university.

Due to their faith, hard work and determination to regard Sophie as a vital, high functioning, very capable member of the family, a successful life is more than possible for every member of this lovely family. The other children will learn to appreciate and accept all persons. I very much appreciate the openness with which this story was shared with the goal to raise awareness and focus on a person’s abilities rather than their disabilities.

tim mcilvoy
on October 20th, 2010

Having a son born with spina bifida it is very hard. His name is Charlie and now is 15 years old and has had 22 surgerys from shunts to metal rods in his back. He has never walked on God’s earth but will walk with him in Heaven way down the road. He has the worse case you can have as far as spina bifida goes. His out look on life is great has never complain about all the surgerys. We do cath him 5 to 6 times a day and this does work. The first years are the worse then it does get better. I believe in what you all have said GOD only put on your shoulders only what you can handle. My wife and I will always wonder what happen but there is nothing we could have done. Take your folic acid even if you are just thinking about having children. God bless all of these children. Tim

Natalie
on October 20th, 2010

hi im Natalie. i just read all about this. i was born with spina bifida. i am 26 years old. i have done sports all my life. i did horse racing 3 to 11 years old. i did track and field 5 to 14 years old. i did tennis. and i did basketball for 10 years starting when i was 11 years old. i valenteer at scottish rite hosptial. i think of there as my second home they are so loving and nice there. i live in DeSoto Texas. every year i always looked forward to going to the spina bifida camp it felt like a new world a great world for me. it was fun loving and everybody was really kinda like u too. it made me soo happy and well full heart alive to be around people that go through the same thing. i would not change a thing of my life i love what i have.

Avie
on October 31st, 2010

Boris and Nicole,

You have a wonderful story and I was moved by your account of your daughter’s diagnosis. I admire your relentlessness and unconditional love. The kind that mothers and fathers have, the kind that motivates children to dream and achieve against all odds. Your family are in my thoughts and prayers. God’s eyes are on the sparrow- your daughter and he will always keep her in his care and other children too.

Hang on in there!

Kitty Freat
on September 12th, 2011

i was told @ 29wks my baby have spina bifida and water on the brain i cryed my eyes out when the dr.explained what it was i have 3 kids before whom was born in perfect health an now to know my forth baby maybe in bad shape at birth am really scared ive been told am a strong but when it comes to my kids am not that strong my husband dont want to talk about it he keeps saying our baby is fine we also found out we are having a girl and shes just what we wanted…..am really scared and have no idea how i am going to handle the situation am 30 weeks today

Rebecca
on October 6th, 2011

I love to read stories about people overcoming issues with spina bifida. I was born with it myself in 1988 and it’s amazing to see the improvements that have been made since then. I love that the family is trying to get awarness out there and to raise money for this cause. It helps me get through my day to know that I’m not the only one out there going through this.

Fernando
on April 11th, 2012

I was born 46 years ago with Spina Bifida. i use a wheelchair,have had too deal with the same issues,i can relate.God Bless You.

We have two daughters with spina bifida, one from the womb and one from the heart. They don’t let anything slow they down and they radiate love and joy!

Dianne Pretorius
on July 17th, 2014

Really wish that little Sophie get better and never has to use all those tubes,she’s a really stong and brave little Princess hahaha and beautiful too!
Uhm well I’m a 19 year old girl ,with spina bafida and I must say its pretty hard living with it , I’ve been bullied and teased about it as I grew up in primary , like back then I dindt understand because I thought everyone was like me until I realised that, that’s not the case, and that led to me being insecure about my body because like I’m a teen and I can’t wear all these nice clothes like crop tops or a bikini or even a full swimsiut ,beacause my spina bafida is like a hump on my lower back which meant no wearing vests for me haha ,I usuall wear baggy tops and jerseys and stuff to try hide it and when it comes to dating I usually get dumped because when guys hug they usually hold your waist and that’s where my sbf is and they’re reaction is the worst you’d say I’m some freak ,which really hurts that’s why I don’t hug guys that much or even date because it really crushes my self esteem and self confidence which is pretty low haha like I doubt I’m even gonna get married on day haha,,and I can walk thank God for that blessing,but my letf leg is getting weaker ,I’m not sure why but its smaller than my right and has less muscle and you can tell because when I walk it KINDA looks like my letf leg is a little dumb hahaha if that makes any sense lol , I played field hockey even though it give me back aches sometimes I still do hahaha its my favourite sport and I’d say I’m pretty good lol yeah ,feels really good sharing this to people who kinda understand my situation and to Sophie please always know your beautiful no matter what never let anyone tell you otherwise!:)

Suzette G. Allen
on October 1st, 2014

It was a pleasure watching Boris talk about his family and especially Sophie. My niece was diagnosis at the age of 41/2 years. Before hand I watched Miyoko (niece) mother and father getting very frustrated by accidents because she is a very vocal and so smart. We had half a year to get her use to completing the cath in her belly. Auntie told her we have to get all of the germs out..We were successful and now in 2nd grade. Now Miyoko is in Girl Scouts and doing dance. Please let parents know aand see the signs or what to look for with Spinal bifida. Miyoko is so Beautiful…People has asked her to model or post pics at a photo shoot.

I’m so thankful for Queen Latifah show

Very Greatful,

Suzette (Best Auntie)

Bakhita Saabino
on March 16th, 2015

Christina was born with the birth defect called Spina Bifida. She is now 3/half -years-old and she still does not walk. She does not function normally. Christina is the niece and cousin of the Saabino family who is now part of our Portland family. Christina still lives in South Sudan in Africa where she is unable to get any treatment, but her Portland family wants to bring her here. Her only hope to fight this condition is here in the US.

To bring Christina to America for treatment costs it cost a lot of money , my goal is to $20,000. To help raise these funds, we are looking for your support together we can save her life.

mary
on July 15th, 2015

My daughter was borned with meningocele a form of spina bifida…she is not even one and she has no sensation in her legs. Hardest news a parent could digest..thanks for sharing you story it has offered hope to a heavy heart

Yvette Ramirez
on January 5th, 2016

With the high tech sonograms I’m surprised the doctors didnt catch it.

Lee Weckler
on January 18th, 2016

My son, Josh was born with spina bifida 32 years ago. His spine was open, myelomeningocele. He also had hydrocephalic brain. He is wheel chair bound but he’s an amazing man. We encouraged him to be independent from a very young age. He is the proud father of an 11 year old daughter. I pray your efforts in research bring advances in care for these beautiful children! Thank you for being their voice. Good bless you and your family.

Katrina Johnson Ranasinghe
on January 19th, 2016

Your story really touches me as I am not a child anymore I am 48 going on 49 having lived with Spina Bifida Significant Occulta my life has be torture in many different ways. I have been fortunate to not be stuck in a wheel chair or tubes in and out of me. I now have to use a cane because I am losing stability I fell in the bathtub that it it was terrible to put railings in the tub and now I have a bench. Losing my freedom is one of my biggest house in my life . I to have a tethered cord I had it operated on the two surgeries so far they don’t want to operate anymore because her afraid it will paralyze me I have a spinal fluid leak that they don’t know where it is it’s not showing up so glad would have to do a blood patch to find it They’re afraid that it will paralyze me .
My mother to nothing about forecast said I was born in 67 then he didn’t discuss things like that going through school didn’t know why I was doing so poorly in math and memorizing anything when I had to have my surgery 99 I started to do some research . They said that spina bifida patients of problem with math and reading I don’t have a problem with reading read well it’s retaining I don’t do well with math I literally take panic attacks I’m on Valium just because of that .
Believe me when I say I wish we knew back when I was growing up well we know now. I was picked on in school the teachers thought that I was mentally handicapped , my parents would study with me till 2 – 3 in the morning and I would get up in the morning totally forgetting what I learned and how many exams so of course I got yelled at by moment all of the teachers kept failing me why failed once but they only transferred me in high school the only thing I passed out of was high school and then I went on to nursing and law school I couldn’t law school because I got sick and I started falling. This is why told the doctors that my spina bifida was starting to take its toll on me because I was losing feeling from my knees down to my feet , I would have to physically touch my legs because I think you were sprinkling water on them.
My surgery was in 99 entering November through the Christmas holidays I developed spinal fluid leak so when I had to go back for my spinal check up on the surgery they had to go back in and fix the leak.

No my cord has retethered i’m losing feeling again for my knees town which is why I am falling again.
Because of laughing diseas because of having this disease my immune system is very low, and I have developed many other diseases and illnesses.

The best I can say is at least I’m alive and walking . I
Wish very best for you and your daughter

With all my love
Katrina Johnson Ranasinghe

Please stay in touch and keep me updated

Samantha Stewart
on October 11th, 2016

This is an amazing and touching story. My son was diagnosed with spina bifida when I was 18 weeks pregnant. The doctors suggested that I get an abortion but I couldn’t imagine getting rid of my baby. He was conceived with joy and I had faith that he would be ok. I named him Samson. This name means strength to me and everyday since he was born I’ve held on to that belief knowing that he would always be strong enough to get through anything life sent his way. I still struggle with his condition because he’s not walking like other kids but his dad keeps telling me not to worry because he will walk. It’s hard hearing all the negatives from the doctors, and trying to stay positive at home when progress seems to slow or even stop at times… But thanks for the positive story I’ve needed positivity like this because as a mom all you want is the best for your child and this condition makes you feel like it’s your fault and causes many tearful days and nights. I know that I just have to stay positive

Lisa Liller-Reedy
on December 21st, 2016

I was born w SB almost 47 yrs ago. I walked independently until 36 when I was diagnosed w tethered cord. It is still tethered. I use a walker now. I have 3 degrees and 1/2 done w another. I have had a very successful counseling career and just recently had to go on disability. God has definitely blessed me!! And He is blessing you and your family, too. God Bless!!!

roni woodson
on October 11th, 2017

BORIS AND NICOLE: THANK YOU BOTH. KEEP THE FAITH.
SOPHIE: HANG IN THERE BABY GIRL. GOD IS WITH YOU.